Madison will have what could be the first of several surgeries to try and drain the fluid that is accumulating in her brain.The fluid is accumulating in two types of spaces; in the ventricles and in cysts that have formed where brain tissue has been destroyed. Normally, the ventricles are connected, so draining one drains them all. In her case, they are not communicating and will require surgery to place a catheter than connects a couple of them to the shunt that is already placed. That is the surgery that will happen tomorrow.The ventricles that are enlarged on the other side of her head can’t be connected to the placed shunt, so they will just use a needle to drain some of the fluid as a temporizing measure to relieve some pressure until they can decide what to do next.They will also need to address the cysts at a later time.

The extent of the damage is severe, and her outcome could range from the moderately challenged to totally disabled. The neurosurgeon still has some optimism that there is a reasonable chance of development that can be aided with rehabilitation therapy and devices to help her quality of life (wheelchairs, etc).The nurses and the neonatologist have been preparing us for more severe outcomes where Madison’s quality of life is profoundly limited. It is not out of the realm of possibility, for example, that her current stage of development (the cognitive and motor skills of a newborn) is as far as she gets for the rest of her life. It’s still way too early to know which path she will follow, and the therapist that evaluated her two days ago thought she was normal in pretty much every respect. Still, at some point she will fall off the normal curve of development; we just don’t know where or when.